No endo I should be happy and all I feel ... - Endometriosis UK

Endometriosis UK

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No endo I should be happy and all I feel is frustration

siani3
siani3

Had my lap yesterday afternoon, after years of pain, pain during or after sexual intercourse, irregular bleeding.. years of wondering and doctors appointment, the surgeon comes out to me and says there’s nothing everything looks normal.. I just broke into tears, how! why am I in so much pain, why does it hurt when I have sex! She said would you rather me tell you you have stage 4 endo you should be happy.. Have you tried different positions during inter course.. I was just shocked, I had the procedure done for hopeful answers and have got nowhere, still non the wiser.. I just feel like giving up. Just sent away with no prescription for pain relief nothing.. only told to come back in 6 weeks, has anyone got any information for me any advice

3 Replies

Hiya soery your feeling so down!x I had a laparoscopy back in march of this year and they did find some endo on my left ovary which they cut away and sent me home saying really im cured and i should be fine i was fitted with a merina coil at the same time as my lap as they said it should help my symptoms but i have since had to go back as my pains are all back worse and nothing really has got better i think in my case they saw it as just being mild as it was just on my ovary ligament but now im wondering if something has been missed as i was fobbed of before i had any of my surgery done with all the doctors saying it was in my head and some women just had 'bad periods' you know your body and you know something is not right so i would say persist go back to your gp and explain how your feeling or at your follow up with your gyne. I was never even given a follow up they just saidnif things get back again to visit the gp so i did and so now im back under the gyne lookinh for an alternative treatment but i still feel like they are not really listening as theu class what they found as mild sorry for the long post i guess what im trying to say is i know how your feeling but please just persist on and speak out i hope things get better for you 💟 xx

I understand your frustration, I’m

Sorry the surgeon was not sympathetic or even understanding . They sent me away with no prescription too just take paracetamol and ibuprofen . If they don’t work with you please contact your gp for something stronger pain killers. Make sure you have plenty of rest and look after yourself especially the first few days . I’m not sure if I can give any advice really in regards of next steps . Currently on my 18th day post lap .

Xx

Siani, it is important to return to your GP and ask for a new referral (to a different hospital, if at all possible, or specialised gynae or endo clinic). If the GP says they will just refer you back, tell them you will deal with that if and when that happens.

Once you get to your new specialist appointment: explain your symptoms as clearly as possible and be honest about the first referral, including that they didn't find anything; ask for an MRI scan as this will show any adenomyosis; ask for anything that may show the symptoms are due to a gynae issue (such as prostap) as this will inform any subsequent steps to take; and, most importantly, don't let them ignore you.

Reason I say this is, I was being ignored until I explained I would rather die on the surgery table than continue with the pain. They started me on prostap, and the symptoms disappeared. This was followed up with an MRI, which showed adenomyosis. So, ultimately, they found what was wrong and dealt with it. And all of this was after they told me the laparoscopy didn't show anything.

My story isn't complete yet, but I'm working on it. But no one should be in this kind of pain for 8+ years and having to battle specialists' egos at the same time.

Stick to your guns, hold on tight for the rollercoaster ride of your nightmares, and hang in there. Know that you have all of us here in your corner.

Love, Petra

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